Our fifth encounter was with the Sickness Affinity Group (abbreviated as SAG), a group of art workers and activists who work on the topic of sickness and disability and/or are affected by sickness and disability themselves. The conversation was proposed and led by Laura Amann and Aziza Harmel, both part of the curatorial team of Kunsthalle Wien.
SAG’s main function is that of a support group; members meet each other online or in Berlin, where the group is based, to share experiences, information and resources, and to learn from and connect with one another – trying to counteract the competitive and ableist working structures that they work in.
Next to that, members meet in smaller formations in working, reading and ‘orga’ (organisation) groups. And although they didn’t want SAG to be production-based at first – “we were already overworked and underpaid” – it appeared “difficult not to want to work together,” leading the members to explore how they could collaborate in ways that feel caring and supportive, and to organise the so-called ‘garden projects,’ based on the idea of growing seeds of ideas, watering them, and caring for something which is growing in different velocities.
The latter seems to be a typical example of the group’s working method: rather than imposing fixed ideas of what it should be or focus on, it allows room for certain needs to come to the surface, to be voiced, and to be cared for. This counts not only for the organisation as a whole, but also for its individual members. Together, they try to create and maintain a ‘no shame’ culture where everyone can honestly express how they’re feeling or what they’re experiencing, where everyone feels free to ask for support or a break when a project has ended up being more work than expected, and where labour is divided according to everyone’s (physical) capacities and current financial situation.
The group also emphasised that they are still in the process of learning how to work together, and that the choice for an (online) meeting platform, as well as the decision-making process, usually depends on the type of project, who is part of it, and what everyone’s individual access needs are. The members have learnt that decision-making in this way can become quite time-consuming; something which they always aim to be transparent about when they collaborate with others.
From this very point of view – slowness and flexibility form the basis of care – the participants spoke critically about the rigid interpretation of care within many (art) institutions today, by pointing out that inclusion is not the same as accessibility, which is a reference to the work of Mia Mingus, an American writer who focuses on issues of disability justice. In other words, letting someone in is not the same as being aware of how you need to treat people once they are inside, or how you profit from them being inside. They also stressed that access is not “hashtaggable” or something that can be ticked in a box.
Instead, the question of how to create access, in the broadest sense of the word, requires a lot of (internal) work according to the support group members, and they envisage a vital role for institutions, highlighting that if institutions – from schools to prisons and from hospitals to art institutions – do not think about access on a very deep level, they actually become sites where disability is being created.
In this light, the fact that SAG has been receiving more and more work invitations, especially since the beginning of the pandemic, seems promising. Next to that, the group has welcomed a lot of new members, in large part because people living in different geographical locations gained access to the meetings, as they had all moved online. However, the sudden new influx of members has also brought along new challenges and questions, such as: how to care for that many people? And how to care for them online, on platforms that aren’t necessarily designed to be caring or accessible for all?
The Sickness Affinity Group doesn’t claim to have the perfect answers to these questions, or any other questions of accessibility, inclusivity and care for that matter, but instead, it attempts to create a space where exchanges, discussions, support, and work on and around these issues can take place, based on the principles of slowness and flexibility, for “care is never finished, it’s an on-going project.”